Caregiving in America: The changing rhythm of life for many families

By Mary Jordan, The Washington Post

Posted:
03/10/2014 08:49:42 AM CDT

Alene Moris, center, a womenâ s rights leader in Seattle who at 85 has recently served as a caregiver, speaks during a forum on supporting caregivers" during a Washington Post Live forum on "Caregiving in America" last month in Seattle. She says the elderly donâ t want to be viewed as a problem, and can be part of the solution. (Scott Eklund/The Washington Post)

As Americans age, and living well into the 90s or even past 100 is increasingly common, the nation is facing a crisis in caring for the elderly.

It can be particularly hard on the middle class — those not poor enough to qualify for federal benefits for long-term care and not wealthy enough to afford the high cost of assisted-living facilities or in-home helpers. In fact, much of the daily care for aging parents is done by family members — typically a middle-aged daughter who also is juggling a job and raising children.

It's not always older relatives who need help. Severely injured veterans and children with special needs require constant care, too. Neighbors and friends also are a growing part of this quiet army of caregivers whom President Barack Obama has described as “humble heroes.” Many of them, he said, “have put their own lives on hold to lift up someone close to them.”

To spotlight an issue that is changing the rhythm of daily life formany families, The Washington Post recently held “Caregiving in America” forums in Chicago and Seattle. Excerpts from speakers at those events are included in this special report.

“Budgets reflect our values,” Illinois Gov. Pat Quinn (D) told the crowd gathered in downtown Chicago. He said more resources should be directed toward supporting caregivers. Without them, he said, the financial toll on our health-care system would be astronomical.

It's a job with a high burnout rate, many speakers said. Former first lady Rosalynn Carter said caregivers need to take breaks and talk to others facing similar circumstances. It's critical not to be isolated, she said in an interview. “The chances are that we will all become a caregiver at some point in our lives,” she said.

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Rick Steves, a travel writer and television host, urged those caring for parents with Alzheimer's disease and dementia to “take them out in public with no apologies. . . . It's amazing to me how many things can be closeted in this great nation of ours.”

With demographic shifts and growing worries about who will care for the aging in years to come, there was talk of government incentives for in-home caregivers and turning to the “young old,” those in their late 60s and 70s, for help.

“I am a great believer in being useful,” said Alene Moris, a women's rights leader in Seattle who at 85 has recently served as a caregiver. She said the elderly don't want to be viewed as a problem, and certainly can be part of the solution.

Embrace the challenges of aging

Rick Steves, Travel writer and television host

When you are in a situation where you're dealing with a loved one with Alzheimer's, which is my story, take them out in public with no apologies and let the public see how you're enjoying your life together. I think it's important to take [older people] out and let them make a noise in the middle of a concert. We made a point to do that and I always felt support from people. It saddens me to think that a lot of people never venture out. They're so self-aware or so shy about it. It's amazing to me how many things can be closeted in this great nation of ours because we have so many hang-ups and concerns that way.

Jack Watters, Vice president for external medical affairs, Pfizer

Caregivers are not sick. They don't want sick time. They don't want unpaid sick leave. Caregivers are active members of society who are doing an important job at home and they're also doing an important job at work. [The challenge] is to get employers to understand that. We all have to work from inside. We all have to talk about it.

I manage various people who are caregivers. They can telecommute; they have the flexibility. We just have to show it and talk about it and just act and walk that walk. I think that's how it starts. Legislation makes people do what they have to do. But I really believe that when corporations can start before it's required, that builds incredible loyalty and you want to work there.

Trudi Inslee, First lady, Washington state

The main thing for a caregiver to know is you're not in this alone. Don't let yourself become isolated. Reach out to the resources and share what you know, because you have so much to offer. You can help other people in the same situation and you'll find you have a lot of friends in the same boat. I'd like to see support groups [for caregivers] just like book clubs everywhere.

Alene Moris, Women's rights leader

Right now, we see the elderly as a problem. Why don't we look at the elderly as a resource? We want to help. We don't want to just be trying to keep ourselves busy. I hate that. There are important things to do in life and we need to be able to continue being useful. I'm a great believer in being useful.

We've got all these healthy, “young old,” people who go into retirement from 60 to 75 [years old] — and what do they do with themselves? They want something meaningful to do. I think we need to look at ways in which they go into caregiving. They understand it. They're close to it. They see it. They know that they're going to be there.

Shilpen Patel, Oncologist, University of Washington Medical Center

From the health-care-provider perspective, when a patient comes to me with their family, it is not only about addressing the patient, but their support structure as well. I'll often spend just as much time talking with the patient as I will with the family as a whole, addressing their needs and making sure that they are also well taken care of. If they're not taken care of, they can't take care of the patient.

We are often taking care of our friends. I am seeing that more and more as a health-care provider — individuals come in and it is not necessarily their children who are there caregiving for them. It's their best friend or their neighbor who they've known for 20 or 30 years.

Donna Wagner, Associate dean, academic affairs, College of Health and Social Services, New Mexico State University

I was interviewing employees of a large company that had a really good package of benefits. One employee was telling me that he needed to take his father to his chemotherapy or he wouldn't go. His supervisor had told him that if he missed any more time from work, he was going to be fired. So he stopped taking his father to chemotherapy. A lot of the issue is that managers are not 100 percent on board with this culture change that needs to take place. In 10 years, I hope that everyone in America will have an employer who actually cares about employees' ability to manage their multiple roles. Whether it's a small employer just giving some informal flexibility or a large employer saying, “You have a right to take this time off. You have a right to sit in the office of the geriatric care manager down the hall and solve your problems.”

Caring in America's heartland

Pat Quinn, Governor of Illinois

Caregivers have servants' hearts. I think we always should understand that they have that ability to help another person. Service to others is the rent we pay for our place on God's Earth. That is why we have to make sure everyone in our state and our country understands how important caregivers are.

Our budget reflects our values, and so does how we behave toward our parents and those who are older than us. We have a program called Community Care that we've spent almost $1 billion on for low-income adults who need help to stay in their homes. We want folks to be able to stay in their homes and in their neighborhood. We have individuals [to help older people] who are hired at modest salaries but with benefits, and with an opportunity to grow in the job. We also have a volunteer program called Senior Companions, where folks who are at whatever age can volunteer to be a companion to somebody in their neighborhood or someone they know. The heart of Illinois is the heart of a volunteer. We want programs that engage everyone and do things that are necessary — mow the lawn, shovel the snow, listen and talk, read together, watch television together. I think companionship is very important.

Joan Lunden, Journalist and caregiving advocate

In 1930, the average life expectancy in the United States was 59 1/2. Today, it's about 81 for women and about 76 for men. The fastest-growing part of the population today is the oldest old, those over 100. They say that the person who will live up to 120 has already been born. Now that's exciting — and that's really daunting.

In the old days, you had one or two parents who were going to have to be financially and emotionally responsible for. But now when you have parents and stepparents and each parent remarries, you could have four or five people that you feel emotionally and financially responsible for.

Start a conversation with your parents about what they envision their later decades to be like. I also highly recommend getting out a video camera and asking them questions about what life was like when they were young. This is going to be the most priceless possession you'll ever own.

Ask them what life was like when they were a child. What was life like when your parents met? And when you're going down this road, make sure you get all the health details of who had polyps and who died of colon cancer. You'll get it as long as you take them down Memory Lane. Because the older you get, the more you connect with your past. You might not remember what you had for lunch but you can remember a lot about your young life.

E-Shien Chang, Researcher, Rush University Medical Center in Chicago

The Chinese community is one of the fastest-growing populations in the United States, but we know so little about their needs. A lot of the expectation is intertwined with what we call “filial piety,” the Confucian ideal that really dictates each child's obligatory responsibility to take care of their parents when they grow old. However, there is a reciprocation. Parents are also expected to provide overall guidance and wisdom to their family member. When you're growing up, your parents are supposed to give you unconditional love. But at the same time, the children will also reciprocate in the way that the piety, the filial care, is not only practical support, it's not only material support, but also emotional support. That's really the relationship, the expectation, that's binding all the families together.

We talk about a pain scale in the medical community, one through 10. How bad does it hurt? If we had the same thing in talking to caretakers about cost: What is your financial pain? It probably would register nine or 10, if not off the chart. There are ways to find cash [including] reviewing life insurance policies, annuities. If the person qualifies for Medicaid, there is a way to pay that caretaker under Medicaid. I'm not promising it's a lot, but it's something. Tax planning is huge. A lot of expenses can be tax-deductible.

If a caretaker is named as a trustee on a trust, he or she can often step in and make decisions about the financial assets without taking title to those assets. So it can be an important mechanism to have in place. For example, I have a trust, my daughter is trustee. If I begin to get a little flaky and she gets a couple — or maybe three — doctors' opinions, she can take over. She can become my acting trustee, governing anything that I put in that trust.

Troubleshooting, and tailoring how you help

Rosalynn Carter, Former first lady, president of the board of directors for the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University

There are four kinds of people in the world: those who are currently caregivers, those who have been caregivers, those who will be caregivers and those who will need caregivers.

There are going to be many, many more older people. We're living longer. There's the baby boomers. There's also the veterans coming home with physical problems, mental problems, PTSD, traumatic brain disorders. Somebody's going to have to take care of them. There's a dearth of geriatric professionals and those who know how to care for people with mental illness. There's going to be a greater need for them.

We [care experts from the Rosalynn Carter Institute] go into the home of a family. We ask them to name five problems they have and then we work through the problems.

For instance, there was one woman whose husband had Alzheimer's. He wouldn't go into the bathroom. But he loved plants. And so when our trainer, our care coach, was working with him, one day they decided to put a plant in the bathroom. And he went in and watered it. Now he goes in and gets in the tub. He takes a bath and goes to the bathroom.

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